Posts Tagged ‘autism awareness’

If you’ve been a long-time reader, you know my posts run the gamut of vents about daily life with autism, frustrating school run-ins, interesting (or scary) autism news articles, and opinions about the world of autism. If it’s about autism, it’s in here somewhere. Like any parent of a child on the spectrum, I’m a 24/7 advocate. That said, I still ramp it up during Autism Awareness Month. My house is surrounded by blue lights — not to represent or advocate an organization, but to get the word out on autism. (Believe me, the blue stands out and gets questions.) I carry more autism cards to hand out, I talk about it more in general, and in specific, I suggest other businesses celebrate Autism Awareness Month. I work with anyone available to get the word out, because the more the word is out, the more understood my son will be. The more understood the neighbor’s son will be. The more understood my nephew will be. And the more understood those children we walk past in CostCo, the library and the child melting down at Disneyland will be. And the undiagnosed? Their parents may see the signs earlier. With enough awareness, maybe one day autism will be a thing only pre-existing children/adults have, and it won’t occur anymore. I can hope, right?

Please look around your community and see what events are occurring. For us, we’re taking place in this walk on Saturday. A bit of a drive, but it goes towards Dogs for Autism, and as my son has a service dog, we know that you can’t put a value on it, and every child with autism should have that special opportunity.

Put a ribbon on your blog. This BloggersUnite page is full of resources and has a ribbon and autism awareness badge available.

Write up a blog entry about the month, even if your blog isn’t about autism. Do you know a family with a child with autism? Offer to babysit so the parents can get out for a couple of hours. Have your child set up a play-date for the child — I tell you, that’s one of the best things someone could do for me. Our kids have social issues and are frequently left out of parties and other gatherings. A lot of places ask for financial donations, but there are other ways to make a difference.

I’m off to find some notes about BB to share for my upcoming school training. Wish me luck!

I’ve got some strong feelings on vaccines — I’m one of “those” people, you know, the people who don’t want anti-freeze components, formaldehyde (yes, the stuff used to preserve dead bodies) and thimerasol (a form of mercury, known to cause mercury poisoning symptoms) injected into my body or my children’s bodies. I also feel that, hold onto your seats, we parents know our children best, and — still sitting down? — should have the right to determine what our children are exposed to, taught, administered, fed, etc. Silly me, I know, I live in a ‘free’ society, yet I expect that freedom to extend to my parental rights when the government insists that it knows better about vaccines. For now, I still have the freedom to say yes or no to vaccines, so I use that right. I also educate myself about all vaccines, not just the ‘mandatory’ (not) school vaccines, but those that continue to crop in and make big money for pharmaceutical companies. The HPV vaccine won’t come near my girls (unless they decide when they’re adults that they want it, and so far, my 19 year old daughter has read enough of the fine print to know that possible death or severe illness is less preferable than being smart with her body) and no one in my house has gotten the flu vaccine in years.

Interesting thing about the flu shot that many people don’t know is that it only protects against the strain(s) of flu that the manufacturer thinks will be the strain(s) to worry about that season. Check out this article (2007-2008 Flu Vaccine a Failure, Worst Flu Season in 4 Years, WiredPRNews.com) for some details on what an awesome (cough) job this most recent flu vaccine did. Was it really worth the dose of thimerasol that came along with it?

While thimerasol may have been taken out of regular childhood vaccines, there’s a common misconception that children stopped getting vaccines containing thimerasol back in 2000 or so, when in reality, manufacturers stopped putting it into newly manufactured vaccines, but the vaccines that had thimerasol were still used until they expired. In some cases, they were used years later. So if you think your child wasn’t exposed, you still might want to review their records. Lot numbers on vaccines are tracked, and you can research to find out exactly how much mercury your child was exposed to. It’s rather scary, and honestly, I have yet to research it on either my autistic son born in 2000 or my epileptic (but no brain damage/injury — in other words, no reason found) daughter born in 1995. I already know I should have said no to vaccines. Maybe one day I’ll do the math.

However, let me be clear. I am not anti-vaccine. I am pro-vaccine. However, I am pro-SAFE-vaccine. The unnecessary garbage in the current vaccines needs to be removed before they are safe though. Sure, it might cost a little more to manufacture safe vaccines, but aren’t our kids worth it? Current vaccine schedules expose our children to something like 36 vaccines in the first three or so years.

I believe autism is caused by a child being genetically pre-disposed to autism, and when they are exposed to some toxin, they then have autism. (This would be why not all children who get vaccinated get autism, a common question I get.) Obviously, I’ve simplified that but you get my drift. For some kids, this could show from birth onwards. I know people who feel that their child’s autism wasn’t caused by any toxin or environmental issue because they were ‘different’ from birth. (And I’m there with you, my son was different from birth.) However, a lot of those people forget that their child is given a bunch of shots there in the hospital, and within days of birth, then weeks, and then months. In our case, my son was easily irritated, wanted to be tightly wrapped, stared at ceiling fans, didn’t look at us much, and flailed at startling sounds from birth, but at around 18 mths or so, things worsened. Does that mean the autism ‘began’ at 18 mths, or just that his developmental delays started to become more evident? Hard to say, but I fully believe that had I not given him the vaccinations that I did (and we didn’t even do them all) that he wouldn’t be in the same situation he is today. Who knows, maybe some other toxin or medicine or whatnot would have contributed towards autism, but we’ll never know, and therefore I can’t rule out the vaccines.

I run into more and more people questioning vaccines. I respect those who don’t agree, but that doesn’t mean that vaccines can’t be improved upon to make everyone happy. The weird thing is that most of the people I know who believe vaccines are innocent don’t have a child on the spectrum. Hmmmmmm.

And for people that think that an unvaccinated child could endanger their life or that of their child’s? If your or your child’s vaccines work, an unvaccinated person poses no threat. Another hmmmmmm.

With 1 in 150 children being diagnosed with some form of autism, people need to realize this is an epidemic, and there’s no such thing as a genetic epidemic. Something out there is causing it, and we need to figure out what it is. It’s Autism Awareness Month. Wherever you are on the topic of vaccines and autism, public awareness is key to getting the funding out there for the so-needed education and advocacy. My mantra? “Educate, advocate, and love.”

It’s been a week since I wrote about my discouragement with promotion of Autism Awareness Month. I wish I could say I felt a ton better about it, but I am afraid that the momentum will slow as we get further into April.

That’s it for now – my little one’s been raging since yesterday morning, and is upstairs sobbing hysterically now, in his bed, his ‘cave,’ his safe place. Not sure yet what’s got him so out of sorts but we’re working on figuring it out. Just getting him home from school took 15 minutes, while he found his backpack, then his headphones, and we avoided the crying at school at least. Now? Who knows, but we’ll see.

I was cruising around the net this morning for news of activities in honor of World Autism Day, and found an article that I was sure had to be an April Fool’s day prank. (In fact, the timing of it still makes me wonder, even though it’s purported to be serious.) If you haven’t yet visited AAP’s site, and proclamation that they have met with DAN! representatives to understand Defeat Autism Now treatments and interventions better, it may just be the best thing you read any time soon. Oh, and they also recognize World Autism Day.

CNN has special broadcasting all day today. I’m watching now and unless Bernanke’s economics speech has something to do with autism, I guess it’s not a marathon of autism segments, but I’m not changing the channel. (And I actually learned something that I probably wouldn’t have cared about much before, until I try to sell my home or fill up my gas tank.) On CNN’s home page, you’ll find a link to Autism: Unraveling the Mystery, quite an inclusive list of videos and news articles about autism and those it effects. It showcases adults with autism, parents of autistic children, doctors, vaccine controversy, Jenny McCarthy..and the list goes on. Even if you don’t have time to read/watch it all today, share the link. Put it in your sig line. It could be the easiest autism advocacy/awareness effort you’ll do.

You can buy autism awareness bracelets at numerous sites in my blog list — TACA, National Autism Association, Generation Rescue, and so forth. Maybe today is the day I should wear my “Autism: It’s no mystery, it’s mercury” t-shirt? (Would that tick off the doctor I have to see this morning to refill my migraine medications? Do I dare risk it? A migraine is pretty painful and puts me out of commission for days……) If nothing else, slap an autism awareness ribbon on your car and be prepared to tell the approaching strangers (who will come, I promise) where you bought it. And oops, leave some of your autism education cards in public places. There’s not a better day to deluge the world that autism is here, it’s not going away, and we all need help.

April is Autism Awareness month. I keep looking around to see what major entities are going to do — you know, how they have pink appliances, pink pens, pink ribbons, pink makeup, everything pink for breast cancer awareness and blue bracelets for cancer, etc. — but so far, the only place I’ve seen so much as a slew of puzzle piece pins is in the Nascar community. We’re at 1-in-150 children with some form of autism, and that’s all I can find? (And way to go, Nascar, for doing this. I would love to see the money go to NAA or TACA, rather than Autismspeaks, but at this point I am at least glad to see the awareness there, period, as they do a great job of discussing autism and giving back to the community.)

I heard Barnes & Noble was doing some reading or related events to help with awareness, but when I last looked at the participating branches here in California, I was sad to see only a couple listed, and nothing local. An email to B & N asking what I could do to help with one locally, or where more were, has gone unanswered for over two weeks now. I see CNN has some autism-related content on Wednesday, April 2. I can’t really find much being done for month-long exposure, though there are some one-time events scattered around. I sure hope I’m missing the big entity events somewhere, and in case I am, I’d love to get some comments directing me on where they are so I can promote them.

On a related note, what are you doing for autism awareness this month? I created some new cards to hand out to people in public: green for mild autism awareness, yellow for “hmmm, you could do with a little autism education” and red for “whoa, hold on, you did NOT just say that to/about me or my child.” I’ve been sharing more and more online links/articles with people. Not sure what else yet, as awareness has become a part of my everyday life, so it’s hard to think of new things that go above and beyond. Guess it’s time to ramp it up a bit….along with this blog entry, a pretty mundane one but considering I’m coughing up a lung as I type, I’m just glad that I can backspace enough to fix my typos.

Have a good autism awareness month — I’m anxious to see what others are doing.

Did you just hear that high-pitched scream? The kind that makes you wish you were only hearing nails on a chalkboard? The kind that makes dogs howl and cower under a bed? The kind that you think “wow, my kid’s tantrums don’t look so bad now.” That’s what just occurred here. We haven’t seen them this bad in a few weeks, and I didn’t miss them. Nope, not a bit. In fact, for a second, I was thinking “how did I ever deal with this all day every day?” Then he sat up with monstrous strength unknown to small children, and I remembered that this is why we decided to put him on medication. I couldn’t deal with it all day, every day, and neither could he.

I don’t know what is wrong that caused this. Well, I do know what caused his anger, but for it to get to that level? Who knows. On a ‘normal’ day anymore, finding his Gameboy case on a shelf other than where he put it would cause some annoyance and yelling, but not the “Curse you, Bubba, curse you!” that it caused today. This week, he’s out of school, had some Easter candy (though none since Tuesday) and there’s been a few dietary infractions…but this seems extreme for that. Then again, who knows. Maybe the dyes are still in his system from the Easter candy he ate on Saturday/Sunday. Yep, who am I kidding, I helped bring this on.

Right now, he’s calm…after he exploded, the extreme sadness and sobbing kicked in. The heartwrenching, saddening sobs that make you wish for anything that could stop your little one from feeling that sad. That out of control. That much hate. (And hate it was, based on what he was yelling.) There’s gotta be more that can be done, but we’ve tried behavioral therapy…a lot of it. At one point, we were told that without medication, he may never truly get a grip on it. Now that scares me, though I have hope.

During Autism Awareness month, I truly hope not just the non-verbal, handflapping children are in the spotlight. Not that they shouldn’t be, don’t get me wrong, but people need to see ALL types of autism. They need to see the aggression of little kids with strength of someone twice their size, hear the venom coming out of their mouths, and hear a list of what little is available to help. We can’t let the public think that there’s two kinds of autism: non-verbal, and Asperger’s. They need to realize that there’s a spectrum, and this population of kids like mine exist, in big numbers. They aren’t spoiled. They aren’t products of bad parenting. They aren’t lacking self-control..well, they are, but not of their own or anyone’s choosing.

So now he sits eating a milk-free brownie. My older ds is astounded by his brother’s complete and utter lack of an attention span anymore, and I am in a way, too. He’s never had a long one, but this week, he’s bounced from watching Wonder Pets, spreading Pokemon all over my bedroom, spreading stuffed animals (his friends) all over his room, starting to make a book, playing a round of Guitar Hero, and back to Wonder Pets…all in about 8.4 minutes. How is he not exhausted, but everyone in his wake is?

Life with autism is unpredictable. As the saying goes, “If you’ve seen one person with autism, you’ve seen one person with autism.” They’re all so different. Yet, ironically, they’re each predictable in their ‘issues,’ if you will. I know my son will get up and want his pancakes heated on a plate, stacked, then cut in two directions, then slathered in syrup. He wants his ‘coffee’ (chocolate almond milk) in his white cup with the blue lid, and placed at his chair. From there, on a non-school day, all bets are off, but I know it’ll be a whirlwind of activities, many odd, in a short period of time. I know if we talk quietly so as not to interrupt him, he’ll accuse us of talking about him. I know that if a show he’s Tivo’d is deleted, he’ll scream and yell that he’s going to beat up the stupidhead that did it. I know that when his sister gets a phonecall and he doesn’t, he’ll flip out that he has no friends, and we’ll have to limit his talking about no friends to three minutes, or we could fall asleep to that same discussion ten hours later and he’d barely notice, only to have to start the conversation over, verbatim, if our snoring disrupts. And I know that when he falls asleep at night, finally, and only after his clonidine helps, I’ll cuddle him and hug him and tell him he’s the sweetest boy in the world.

Dare we hope it’ll help? I’m thrilled by some of the names on the committee list though — Lyn Redwood (Coalition for Safe Minds) and Lee Grossman (Autism Society of America) are excellent choices. The mention of vaccines causing autism is a good sign, but it’s almost scary to get encouraged by the thought of that being mentioned in the same article as the CDC (Centers for Disease Control).